NICE GUIDELINES for CLINICAL PRACTICE                       UPDATE 22nd August 2007

 
Background:

The National Institute for Health and Clinical Excellence (NICE) have now published their document for clinical guidelines  released on 22nd August 2007).

 

The document is proposed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).
Although not an original stakeholder (IiME only became a charity in May 2006) we registered to become a stakeholder in these guidelines and supplied our response to the Draft Guidelines in 2006.

IiME Response:

Invest in ME has reviewed the guidelines and our comments are available  

NICE Documents:

The official page for the NICE Guidelines on CFS/ME. Click here
Comments Made by Registered Stakeholders (including many of Invest in ME's responses), and responses from the NICE Guideline Development Group Click here

Summary of Response:
It would be easy to write something fatuous and disingenuous such as 'we believe the NICE guidelines represent an opportunity to drive forward the improvement of services for those with ME'.

Such a view would be a sell-out to people with ME and their families.

The reasons why the NICE Draft Guidelines were almost universally condemned was due to the poor quality of analysis and their lacking in ability to serve the needs and hopes of people with ME and their families. Without drastic change to the draft guidelines the NICE guidelines would have been irrelevant and, to quote Des Turner (Chair of the parliamentary APPG for ME), "unfit for purpose".

Reaction to the NICE guidelines can still be summed up as continued dismay that NICE have chosen to highlight, yet again, Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET) as the most effective forms of management (aka treatment) for ME. The emphasis still seems to be on these dangerous and unhelpful psychiatric paradigms - paradigms referred to and recommended as therapies and as treatments for ME despite ME patients and groups stating they are ineffective or harmful.

The inclusion of as wide a possible base of chronic fatigue states in the draft guidelines seems still to be prevalent and continues to do disservice to pwme.

Essential biomedical research which distinctly shows the biological nature of ME is still ignored

The credibility of NICE is again questioned by patient groups.

Please add you comments and thoughts to the NICE guidelines by sending comments to us - click here.


 

More Information on NICE:

Invest in ME's submission to the Health Select Committee investigating NICE - click here.

Our response to the original NICE draft guidelines for ME Our response is available in PDF here or in the Nice pro-forma here.

See here an important article by Margaret Williams relating to the NICE document - click here.

In the meantime remember our document on CBT (click here) as well as other articles on the PACE and FINE trials which have been set up by the Medical Research Council, and which also endorse psychological therapies.

Other Relevant Documents - see our InfoCentre Library and our description of Guidelines.

Meanwhile if any readers have any experiences please contact us.

Invest in ME - Supporting ME Awareness